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ESME - The Most Effective Rated Treatments for Chronic Fatigue Syndrome - Norway

Discussion in 'Latest ME/CFS Research' started by Hope123, Apr 29, 2010.

  1. Hope123

    Hope123 Senior Member

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    Need help with Norwegian ME/CFS articles

    1. This is an older 2009 Norwegian article on ME/CFS and GET that surveyed 800+ people and found that 79% had problems with GET. Tomk and I are trying to get a translation of the article from someone who can translate it from Norwegian to English. If not the full article at least the tables. (A last resort would be online translators.)

    http://www.tidsskriftet.no/index.php?seks_id=1845496

    Tidsskr Nor Laegeforen. 2009 Jun 11;129(12):1214-6.
    [Patients' experience with treatment of chronic fatigue syndrome]

    [Article in Norwegian]

    Bjrkum T, Wang CE, Waterloo K.

    BACKGROUND: Chronic fatigue syndrome is a highly debated condition. Little is known about causes and treatment. Patients" experience is important in this context. MATERIAL AND METHODS:828 persons with chronic fatigue syndrome (ICD-10 code: G93.3) were included in the study. They were recruited through two Norwegian patient organizations (ME-association and MENiN). The participants filled in a questionnaire on their experience with various approaches to alleviate their condition. RESULTS: Pacing was evaluated as useful by 96% of the participants, rest by 97%, and 96% of the participants considered complete shielding and quietness to be useful. 57% of the participants who had received help to identify and challenge negative thought patterns regarded this useful. 79% of the participants with experience from graded training regarded this to worsen their health status. Overall, the results were similar, irrelevant of the severity of the condition. INTERPRETATION:Most participants in this study evaluated pacing, rest and complete shielding and quietness to be useful. The experience of the participants indicate that cognitive behaviour therapy can be useful for some patients, but that graded training may cause deterioration of the condition in many patients. The results must, however, be interpreted with care, as the participants are not a representative sample, and we do not know the specific content of the approaches.

    PMID: 19521443 [PubMed - indexed for MEDLINE]

    2. I would like to get my hands on the full-text of this article if anyone has it.

    Postinfectious and chronic fatigue syndromes: clinical experience from a tertiary-referral centre in Norway.

    Naess H, Sundal E, Myhr KM, Nyland HI.

    In Vivo. 2010 Mar-Apr;24(2):185-8.PMID: 20363992
     
  2. Gambetti

    Gambetti

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    I'm sure there are a number of Norwegian ME/CFS patients reading this forum who could help with translation. Do you want me to take a stab at it, or would you rather contact the ME association first?

    I don't have the text for the second article available, but I got my ME diagnosis from one of the authors mentioned there.
     
  3. Bokml og Nynorsk. Riksml og Bokml er litt ulike, nei? Riksml er ikke en "offisielt" sprak i Norge.
     
  4. It says "Bokml and Nynorsk. Bokml and Riksml are slightly different, aren't they? And Riksml is not an official language of Norway."
    Bokml and Nynorsk are the "two" Norwegian languages. Riksml is a semi-official dialect. None of them are vastly different from eachother, though. Nynorsk is slightly more anglicised.
    :Retro smile:
     
  5. Hope123

    Hope123 Senior Member

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    Thanks for the responses, Maarten, Gambetti, and Jonathan. A good start would be a translation of the table headings. TomK directed me to one of the Norwegian groups but they don't have an English translation.

    And no, I didn't know that there were two different versions of Norwegian! That's the beauty of this site -- you get to meet people from different countries.
    Is is anything like Chinese? The People's Republic of China has Mandarin deemed as the official dialect but there are many, many other dialects in China. My Mandarin isn't as good as my native dialect and once, where I was working, there was another scientist who was Chinese but had been raised in England/ Germany. We both knew our native dialects but our Mandarin wasn't good so we ended up conversing in English, which some people got a kick out of since we were both ethnically Chinese. (Luckily, the writing is the same.)
     
  6. It's a little different than in China. Bokml is sort of like "natural Norwegian", Nynorsk was an attempt to engineer a language that was based solidly on Norwegian but more compatible with the other Scandinavian languages. So Nynorsk is sort of artificial. A lot of Norwegians don't like it.
    Riksml is more akin to a dialect of Bokml.
     
  7. shrewsbury

    shrewsbury member

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    I'm enjoying learning a bit about Norwegian along the way here. Hope123, it looks like you're getting help here already, but ffr Diagnose Support has some great translators. http://www.diagnosesupport.com/health/

    I've seen Chinese who speak different dialects basically talking with their hands, writing the words with one finger on the palm of the other as the dialects are often mutually incomprehensive, but the writing is the same. Very cool.


     
  8. Dolphin

    Dolphin Senior Member

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    Thanks to anybody who can help with the translation.
    I'm particularly interested in the two Tables which hopefully shouldn't be too much work.
     
  9. Gambetti

    Gambetti

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    Sure tomk, I've translated the tables and working on the rest. I'll send as attachment to you on email, if that's ok, as I don't know how to make tables here.
     
  10. Gambetti

    Gambetti

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    Patient experiences with treatment of Chronic Fatigue Syndome

    T Bjrkum C E A Wang K Waterloo


    Summary

    Background: Chronic fatigue syndrome is a higly debated condition. Little is known about causes and treatment. Patients' experience is important in this context.

    Material and methods: 828 persons with chronic fatigue syndrome (ICD-10 code: G93.3) were included in the study. They were recruited through two Norwegian patient organizations (ME-association and MENiN). The participants filled in a questionnaire on their experience with various approaches to alleviate their condition.

    Results: Pacing was evaluated as useful by 96% of the participants, rest by 97%, and 96% of the participants considered complete shielding and quietness to be useful. 57% of the participants who had received help to identify and challenge negative thought patterns regarded this useful. 79% of the participants with experience from graded training regarded this to worsen their health status. Overall, the results were similar, irrelevant of the severity of the condition.

    Interpretation: Most participants in this study evaluated pacing, rest and complete shielding and quietness to be useful. The experience of the participants indicated that cognitive behaviour therapy can be useful for some patients, but that graded training may cause deterioration of the condition in many patients. The results must, however, be interpreted with care, as the participants are not a representative sample, and we do not know the specific content of the approaches.

    Based on first author's thesis for master's degree at University of Troms, 2007 (1).

    Chronic fatigue syndrom is a disease characterized by debilitating fatigue (2). In addition, patients experience a number of symptoms such as flu-like symptoms, temperature disturbances, sore throat, swollen and painful lymph nodes, muscle pain, hypersensitivity for sensory input, heart palpitations, dizziness, problems with memory and concentration, and non-refreshing sleep (2). Diagnosis is done on the basis of the typical patient story, recognition of the clinical picture and the exclusion of differential diagnoses (2). There's poor knowledge of causality and effective treatment. The NICE-guidelines from 2007 emphasise that health workers should co-operate tightly with patients during the diagnostic evaluation process, and in all phases of treatment (3). User surveys are therefore important in order to increase knowledge of useful treatment.

    Mostly there are three approaches to treatment and symptom relief that's been debated: cognitive behaviour therapy, graded training and pacing. Cognitive behaviour therapy is a psychological treatment where the patient learns how to identify dysfunctional thoughts and attitudes and then challenge them (4). For the patient this can entail processing negative thoughts about their fatigue, often combined with behavioural experiments where physical activity is an element (5). Graded training is structured and guided physical activity where the goal is to gradually increase activity and endurance (6). Activity adjustment, often called pacing, emphasises an individual balance between rest and activity so the patient doesn't force himself into activity resulting in deterioration of symptoms (6). The goal is for the patient to be as active as possible, but avoid relapses due to overexertion. The major task in pacing is therefore to interpret bodily signals, and to act appropriately in relation to these.

    Today there's a high degree of uncertainty as to what is the best treatment for these patients (2). Primarily this uncertainty seems to relate to what benefit they can get from physical activity, how to go about it if desired, and whether the activity should be balanced by varying degrees of rest. As fatigue is the main symptome, and normal tiredness is normally helped by rest and quietness, it's important to gain increased understanding of the effect this has on the patients. The Norwegian Association for Myalgic Encephalopathy (ME-association) include shielding and quietness on a list of treatments they feel patients can benefit positively from (7). The ME-network in Norway (MENiN) write in an attachment to the report from the Knowledge Centre that pacing and resting are the treatments that this patient organization has the best experiences with (8).

    A survey article from 2008 conclude that cognitive behaviour therapy might be more effective than other psychological treatments (9). The authors also refer to two studies where they've compared cognitive behaviour therapy and graded training, and sum up that these treatments can appear equally effective in reducing fatigue and obtaining clinical response. In the report from National knowledge centre for health services, it is concluded that cognitive behaviour therapy and graded training are the most encouraging treatments for chronic fatigue syndrome (2). The British patient association, Action for M.E., found other results in a user survey (10). Only 7% of the participants judged cognitive behaviour therapy as useful, while 67% thought that the treatment had no effect, and 26% said that the treatment led to deterioration. Half the participants were of the opinion that graded exercise led to worsening of their condition. About 90% judged pacing and rest as useful (10).

    This article presents results from a Norwegian user survey that examined the experiences of Norwegian patients for various treatments for symptom relief.

    Material and methods

    All the members of the ME-association and MENiN were invited to participate in the user survey. The patient associations received information pamphlet, questionnaire and stamped return-envelopes that were distributed to members. In cases where the patient had a serious functional failure, the questionnaire was filled out by a relative or someone else with good knowledge of the patient's situation. In the information pamphlet it was made clear that only persons that had officially received the diagnosis post-viral/chronic fatigue syndrom (ICD-10: G93.3) could partake in the study, and that the parents had to decide participation for patients below 16 years of age. Information was given that participation was voluntary and anonymous. Regional committee for medical research ethics, Northern Norway, recommended the survey.

    When working out what the Norwegian questionnaire should look like, we contacted the British patient association for ideas on important issues. A questionnaire was made that closely resembled what Action for M.E. Had used in 2001 (10). In the Norwegian questionnaire we chose to present the three treatment approaches cognitive behaviour therapy, graded training and pacing in the following way:

    Help for identification and challenge of negative thought patterns (like catastrophe thinking)
    That you independent of how you feel that day follow a predefined activity plan that gradually increases in intensity
    That you dependent on how you feel that day seek a balance between activity and rest so that you never force yourself neither physically or mentally

    In addition to these forms of treatment we included in the questionnaire two approaches that the Norwegian patient associations deem useful:

    Rest (including resting in bed)

    Complete shielding and quietness

    Depending on whether the participants had experience with the five different approaches, they were asked to judge them as: useful, no effect or deterioration.

    We defined two extremes of patients: the most heavily affected (n=61) and the least affected (n=190), from the answers on the questionnaire. The patients in the most affected group should be bedridden and completely dependant on help from others for a minimum of one year. Moreover they should have had a maximum of one hour cognitive capacity per day, for at least a year. Socially they should have been too sick to see friends and acquaintances. The participants in the least affected group should never have been bedridden or completely dependant on help from others. Their cognitive capacity should never have been less than one hour per day, and they should not have been too sick to meet friends and acquaintances. Cognitive capacity is seen as for instance capacity to hold a conversation, read, listen to radio/music, watch television, or use the computer.

    Statistical analysis was performed by the help of SPSS, version 14. Based on somewhat small groups Fisher's exact test was employed in order to investigate if there were statistically significant group differences in how the most affected and the least affected patients judged the effects of the various approaches. In order to investigate if age and gender could influence patient experiences, there was performed univariat linear regression analysis. Here age and gender were independent variables, while cognitive behaviour therapy, graded training, pacing, rest and complete shielding and quietness were dependent variables.

    Results

    There were sent out 2060 questionnaires, which was the number of members that the patient associations had all in all at the time. 828 (40,2%) persons responded, 697 women and 131 men. The average age was 43,7 years (SD 12,6). 780 persons (94,2%) said that they had filled out the questionnaire themselves.

    Table 1 shows what approaches the respondents have tried, and their evaluation of effect. As can be read from the table, the most respondents have experience with pacing, rest and complete shielding and quietness, and nearly everyone view these approaches as useful. Cognitive behaviour therapy is viewed as useful by a bit over half the respondents who've tried it. A big majority of the respondents who have tried graded training, say that it has led to deterioration of their health.















    Table 1 Patient evaluation of various methods for symptom relief for Chronic Fatigue Syndrome (total of 828 patients)

    Method
    Useful
    Number (%)
    No effect
    Number (%)
    Deterioration
    Number (%)
    Cognitive Behaviour Therapy (n=311)
    177 (56,9)
    112 (36,0)
    22 (7,1)
    Graded Training (n=620)
    81 (13,1)
    51 (8,2)
    488 (78,7)
    Pacing (n=804)
    775 (96,4)
    17 (2,1)
    12 (1,5)
    Rest (n=806)
    780 (96,8)
    23 (2,9)
    3 (0,4)
    Complete shielding and quietness (n=696)
    666 (95,7)
    23 (3,3)
    7 (1,0)

    Table 2 shows that the results are essentially the same for the most affected and the least affected respondents. There are no statistically significant differences between groups when it comes to how big percentage regard the various approaches as useful (all have p-value = 1,0), except for rest. A significantly bigger percentage of the least affected respondents view rest as useful (p=0,023). Most of those who had tried graded training, say that this led to deterioration, but there were no statistical significant difference between groups (p=0,36).

    Table 2 Patient evaluation of various methods for symptom relief for Chronic Fatigue Syndrome: Comparison of the most heavily affected group (group 1, n=61) and the
    least affected group (group 2, n=190)

    Treatment / Symptom relief
    Useful
    Number (%)

    No effect
    Number (%)

    DeteriorationNumber (%)


    Group 1
    Group 2
    Group 1
    Group 2
    Group 1
    Group 2
    Cognitive Behaviour Therapy
    19 (57,6)
    32 (55,2)
    9 (27,3)
    23 (39,7)
    5 (15,2)
    3 (5,2)
    Graded Training
    9 (17,6)
    23 (17,6)
    2 (3,9)
    15 (11,5)
    40 (78,4)
    93 (71,0)
    Pacing
    55 (96,5)
    181 (96,8)
    -
    4 (2,1)
    2 (3,5)
    2 (1,1)
    Rest
    55 (91,7)
    183 (98,4)
    4 (6,7)
    3 (1,6)
    1 (1,7)
    -
    Complete shielding and quietness
    55 (94,8)
    121 (95,3)
    2 (3,4)
    6 (4,7)
    1 (1,7)
    -

    Univariat linear regression analysis showed no significant associations between the two independent variables (age and gender), and the patients' assessments of the various approaches. For that reason there wasn't performed multivariat analysis.



    Discussion

    National knowledge centre for health services was asked to sum up the scientific basis of the diagnosis and treatment of chronic fatigue syndrome (2). In order to obtain more knowledge about the patients' own experiences with attempts at symptom relief and treatment, we chose a user perspective in our survey. However, a possible weakness of the survey is that the participants were recruited through patient organizations. Wyller and associates estimate that there are 9000 18000 patients with this affliction in Norway (2). Put together the two patient associations had 2060 members at the time this survey was performed. That means 11-23 % of such patients in Norway are members of a patient organization, and from these 40% chose to participate in the survey. The survey had a majority of female participants (84%), and even though it is assumed that there are more female than male sufferers, the distribution isn't as skewed as in this survey (11). The patient associations have opinions on efficacy of treatment approaches. Its possible that patients with experiences that are in conflict with these, to a larger extent decide to avoid membership in the associations. It's therefore uncertain whether the participants in our survey are representative for the total population of patients with chronic fatigue syndrome in Norway. This could make it difficult to apply our findings to the patient population as a whole.

    In broad outline the results of our survey show the same as what was found in the British user survey; pacing and rest is regarded as useful by almost everyone, and many have negative experiences with graded training. The negative experiences with graded training stands in contrast to the opinion of Wyller and associates that this form of treatment is encouraging (2). Our findings also deviate from Cochrane's survey article that found reasons for saying that cognitive behaviour therapy and graded training appear to be equally effective (9). The discrepancy in results as regards to graded exercise could be explained by the fact that controlled studies often haven't included the most affected patients. However, we did not find any difference between the most affected and the least affected group when evaluating this form of treatment. It is possible that the participants in the user survey have attemped bigger or faster increase in activity than what most scientific studies have suggested as appropriate. A study about training at fairly high intensity (75% of VO2 max) did not show positive effect on fatigue, and some of the participants dropped out of the treatment (12). A third explanation is that the participants in the user surveys haven't had follow-up from health workers, and that this can have contributed to negative experiences.

    Wyller and associates emphasise cognitive behaviour therapy as the second promising treatment (2). While only 7% of the British patients view this as useful, a bit over half the Norwegian patients think it is useful. A possible explanation for these differences in results between the two user surveys can be linked to how the questions were posed. In the British questionnaire the participants were asked to judge the usefullness of cognitive behaviour therapy, while we chose a descriptive way to phrase it. When asking the question we didn't include the behavioural component (physical activity) of cognitive behaviour therapy, but only the cognitive component (help for identifying and challenging negative thought patterns). The many negative experiences with graded exercise can imply that if an increasing level of physical activity had been included in a description of cognitive behaviour therapy, then less patients would have judged it as useful. Its also possible that the Norwegian participants might have understood the question so that it involved other treatment options other than cognitive behaviour therapy, while the British participants have considered cognitive behaviour therapy run by a professional health worker.

    As regards to cognitive behaviour therapy, its problematic to compare results from the user surveys with the scientific studies evaluated by Wyller and associates. The content and follow-up in the approaches might have been different, but in addition the scientific studies didn't use fatigue as measure of efficacy, but rather evaluated physical health, quality of life and physical function (2). This could be a problem as fatigue is the main symptom of the illness. In the referenced survey article from Cochrane, it appears though that a bigger percentage of patients who received cognitive behaviour therapy, experienced reduced fatigue at the end of the treatment, compared with patients who received minimal or ordinary medical follow-up, or found themselves on waiting list for treatment (9). The results were the same 1-7 months after treatment had ended. The authors of the survey article point out though that when patients who had dropped out of treatment were included in the follow-up surveys, there was no longer any difference between the groups (9).

    Price and associates think that they've found evidence suggesting that cognitive behaviour therapy is more effective than relaxation techniques in trying to reduce fatigue (9). This is interesting in light of the fact that the majority of the participants in our survey experience that rest, and complete shielding and quietness, is useful. After we had collected the data, we realized that these two treatments should have been better described in the questionnaire. They can appear similar, and its uncertain what the participants have understood them to mean. Compared with the hardest affected group, there was a bigger percentage of the least affected that experienced rest as useful. A possible interpretation is that the most ill patients are in so poor health that they don't manage to do anything besides lying in bed or on the sofa, but that this doesn't give symptom relief either.

    Pacing has been shown very little interest in the report from Wyller and associates, probably because there are few, if any, quality controlled scientific studies for such an approach (3). The results from this survey imply that there's reason to devote more attention to pacing, and to the importance of rest, shielding and quietness. Even though the participants in the study have judged these approaches as useful, we don't know if they then mean that these approaches have helped them deal with symptoms, or if they in fact have experienced improvement or remission.

    Disclosed conflicts of interest: None

    Main message:
    Pacing, rest, shielding and quietness is viewed as useful by the majority of the patients in the user survey
    Some of the participants say that help for identifying and challenging negative thoughts are useful
    A big percentage of participants who had tried graded exercise, said that it led to deterioration

    Literature:
    1. Bjrkum T. ME-pasienters mte med det norske helsevesenet: utfordringer og muligheter for helsepersonell i mte med kronisk syke pasienter. Hovedoppgave. Troms: Institutt for psykologi, Det samfunnsvitenskapelige fakultet, Universitetet i Troms, 2007.
    2. Wyller VB, Bjrneklett A, Brubakk O et al. Diagnostisering og behandling av kronisk utmattelsessyndrom/myalgisk encefalopati (CFS/ME). Rapport nr. 9/2006. Oslo: Nasjonalt kunnskapssenter for helsetjenesten, Sosial- og helsedirektoratet, 2006. www.kunnskapssenteret.no/binary?download=true&id=1199 (1.8.2007).
    3. National Institute for Health and Clinical Excellence. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children. NICE clinical guideline 53, 2007. www.nice.org.uk/nicemedia/pdf/CG53NICEGuideline.pdf (1.10.2008).
    4. Beck JS. Cognitive therapy: basics and beyond. New York: Guilford Press, 1995.
    5. Prins JB, van der Meer JW, Bleijenberg G. Chronic fatigue syndrome. Lancet 2006; 367: 34655.
    6. CFS/ME Working Group. A Report of the CFS/ME Working group: Report to the Chief Medical Officer of an Independent Working Group. London: Department of Health, 2002. www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4064840?Idc
    Service=GET_FILE&dID=7575&Rendition=Web (10.10.2007).
    7. Stormorken E. Myalgisk encefalopati (ME), Kronisk utmattelsessyndrom (CFS), WHO, diagnosekode G93.3 (nevrologi); Nevroimmunologisk energisvikt ikke psykologisk tretthet. Kommentarer til rapporten fra Nasjonalt kunnskapssenter for helsetjenesten. Oslo: Norges Myalgisk Encefalopati Forening, 2006. www.me-forening.no/?option=com_docman&task=doc_download&gid=15 (1.7.2007).
    8. Myalgisk Encefalopati Nettverket i Norge. Innspill fra Myalgisk Encefalopati Nettverket i Norge. Vedlegg til rapport nr 9/2006; Diagnotisering og behandling av kronisk utmattelsessyndrom/myalgisk encefalopati (CFS/ME). Oslo: Nasjonalt kunnskapssenter for helsetjenesten, Sosial- og helsedirektoratet, 2006.
    9. Price JR, Mitchell E, Tidy E et al. Cognitive behaviour therapy for chronic fatigue syndrome in adults (Review). Cochrane Database of Systematic Reviews 2008; nr. 3: CD001027, www.cochrane.org/reviews/en/ab001027.html (26.9.2008).
    10. Action for M.E. M.E. in the UK. Severely neglected. Membership survey, 2001. www.afme.org.uk/res/img/resources/Severely Neglected.pdf (5.9.2007).
    11. Jason LA, Richmann JA, Rademaker AW et al. A community-based study of chronic fatigue syndrome. Arch Intern Med 1999; 159: 212937.
    12. Appleby L. Aerobic exercise and Fluoxetine in the treatment for chronic fatigue syndrome. London: National Research Register, 1995.

    The manuscript was received 12th of June and approved 2th of April 2009
     
  11. Hope123

    Hope123 Senior Member

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    Yeah, well hope is what we all hold onto, isn't it? In the Greek myth, curious and mischievous Pandora opens up the box she has been warned not to open, unleashing illness/ poverty/ old age etc. onto humans. She finally suceeds in shutting the box and hears a buzzing sound and is afraid to re-open it. However, she does, and the last thing to come out is Hope.

    http://greek-history.suite101.com/article.cfm/the_myth_of_pandoras_box

    My bilingual skills are little compared to those of my family and my European friends, all of whom speak more than 2 languages.
    I'm not a mathematician; I just know some basic stats.

    As for fine literature, I remember reading the Norse myths as a child and trying to read through Kristin Lavransdatter in college -- I got through the first book but my impatience made it difficult to get through the next two.
     
  12. Hope123

    Hope123 Senior Member

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    Gambetti, lovely work! I haven't read through it all yet but thank you for taking some of your precious energy and time to translate this for us!
     
  13. Dolphin

    Dolphin Senior Member

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    That's brilliant, Gambetti.

    It'd be great if you could post it to: CO-CURE@LISTSERV.NODAK.EDU
    Make sure to put:
    RES:
    at the very start of the subject line or it won't reach most people.
    A lot of doctors and researchers follow that list or the messages are forwarded to lists they are on.
    Co-Cure has a great archive.

    I'm happy to post it otherwise. Let me know how you want to be acknowledged.
     
  14. Gambetti

    Gambetti

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    Glad you both liked it :Retro smile:

    Tom, please post this where you'd like, no acknowledgements necessary.
     
  15. Dolphin

    Dolphin Senior Member

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    Gambetti, a recent article on the study is in http://mcs-america.org/june2010.pdf (just a blog but it has just been posted around) - probably wouldn't have happened only for your translation.
     
  16. Gambetti

    Gambetti

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    Oh, that's pretty awesome tomk, was well pleased to see that :Retro smile:
     
  17. Dolphin

    Dolphin Senior Member

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  18. V99

    V99 *****

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    UK
    Not sure if this was posted by anyone.

    http://esme-eu.com/pacing/the-most-effective-rated-treatments-for-chronic-fatigue-syndrome-norwegian-article-article358-182.html

     
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    Pacing i dont think is really a choice with cfs and i think u just learn in naturally. If u know something is going to hurt you tomorrow your not going to do it, thats pacing, lol.
    Personally 10hrs of good deep sleep is the best treatment, i reckon if u could get good sleep every night, cfs wouldnt be as bad as we would be able to recover from most things alot better. Its our recovery ability thats shot, be it our immune system, sleep, mitochondria. Pacing puts less demands on our recovery ability.

    cheers!!
     
  20. caledonia

    caledonia

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    Cincinnati, OH, USA
    Good study telling it like it is. We have to pace, and rest, rest, rest. CBT doesn't do cr*p, and the GET will make you worse.
     

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